Leaving Normality

A couple of months ago, on the way back from a hospital appointment, Hugo asked me what it felt like when I had my bumpy taken out. Bumpy is our name for Hugo’s port-a-cath/central line. The little device that sits just under the skin to the side of his chest. It will be removed a few weeks after treatment finishes. I explained that I’d never had one and we chatted for a while about why he does. He seemed content with this, but a couple of days later he asked big brother Henry what it felt like when his bumpy came out. It made me wonder how much Hugo understands of his illness and what ‘end of treatment’ actually means to him.

Hugo was 2 years and 4 months old when he was diagnosed. We didn’t have to have a difficult and emotional conversation with him explaining that he had cancer and what that would mean for the next 3 years. He was just too young. We’ve tried to explain things as we’ve gone along, our language changing as his understanding has grown over the years, but it’s impossible to know just how much he comprehends.

So much of the treatment is just part of his life. The hospital visits, the weekly blood tests, the medication he takes everyday. He never asks why, he never protests. Sometimes this saddens me, but there is no doubt it makes this experience easier to deal with. But what will he make of it when these aspects of his life are no longer there? Will he miss them? Will he feel a little lost without them? All this time we have been excitedly counting down to the end, looking forward to the day when our lives will improve, when we get some normality back. But for Hugo, these last 3 years are his normality. The only life he has ever really known is about to change, he is about to leave his normality.

He has never longed for his pre-cancer life in the same way an adult or older child might, because he just doesn’t remember. He doesn’t understand the many ways in which cancer has affected our lives, he doesn’t miss what might have been or feel deprived at things missed out on. He’s happy, he’s content, this is just his life. I know he won’t miss taking medicine and I know he will enjoy the treats we have lined up to celebrate, but beyond that, I just don’t know what he will make of it all.

We have started to try and explain a bit more about the things that will change, to prepare him for the differences. It’s not as simple as ‘no more medicine’ or ‘no more hospitals’, it’s not as black and white as that. I hope we’re speaking in a language he understands. I hope he can feel some excitement and pride as we tick off the ‘lasts’. He has shown himself time and time again to be resilient and strong and I know he will continue to be so. That he will adapt to his new normal, his new life, with joy and enthusiasm.

I want him to understand what it means for his treatment to be ending. To celebrate and feel proud of all he has endured. But of course he doesn’t see himself as brave, he doesn’t understand the enormity of the battle he has fought and I don’t want to scare him. I don’t want to take away the innocence he has by overloading him with information that he’s just not ready to hear. I suppose one day he will be. One day he will have questions and at various stages of his life he will have waves of understanding and I will be there then. I will answer his questions and tell him how amazing he was. How he showed so many people what courage really was, that he fought his battle with love in his heart and a smile on his face. How his spark never once dimmed despite all that was thrown at him. We will celebrate again and again at the battle he will continue to win and I will watch as he sets the world alight with the strength, determination and courage that this experience has given him, even if he doesn’t know it yet.